Buck Up Buttercup

I think I am turning that corner finally. It’s nice to be a little part of the daylight experience again. Those weeks I was bedridden, my husband was my lifeline to rest of the world. I started wondering if there were still other humans out there. Did a zombie apocalypse happen? Did the machines finally become sentient and take over? I wouldn’t know. I was in bed listening to Enya, focusing all my energy on breathing and surviving.

It’s been a slow climb back. Deconditioning is the enemy with POTS but MG is often the buzzkill for exercise for me. My limbs have minimal movement right now because of the weakness/paralysis, but I am working hard to convince my body it wants to move again. I've been trying to get back to walking and my stationary bike. Slow and steady. I'm moving at a turtle's pace while the rest of the world rushes around me at a hare's pace. Slow and steady.

Willing my legs to move so I can walk with my trekking poles

The last few weeks were some of the worst in some time, but I’m trying to remain undaunted and keep moving forward. The thing with bad patches is they start to feel like they will never end, like sinking into quicksand and every time you move or make effort to climb out you just sink further and further. That's a lesson I hope to learn finally: sometimes you have to just let your body sink and then eventually, with patience and diligence, you make the slow climb out. I'm almost there.

This week has been a significant improvement. I’m taking joy in little things and accomplishments:

One of my friends had a yard sale and gave away many of her vintage clothes. I love all things vintage, and I woke the morning of the yard sale knowing there was no way I could leave my bed/couch still and venture out. The thought of all those clothes sitting there made me so sad. But one of my besties, Carrie Anne, my thrifting soulmate and sister in brokenness, gathered up what she thought I might like and brought them over. My world was complete.

A pile of free vintage clothes. Who could ask for anything better?

**

Something really really great happened. One of my goals has been to get some of my writing in online publications. I sent out an adapted version of one of my blog posts about learning to live honestly and authentically with illness to a few places. I wrote this post about a year ago when I had to stop working and I had realized I had been living a lie for years and the gig was up. The Mighty picked it up and posted it a few days ago. You can see it here. I'm hoping to start sending more work out there. I recommend all the articles at The Mighty. They post stories from the ill, the disabled, and their allies. It's a great platform for voices that are so often invisible. 

After this article was posted and I started sharing it in some of the groups I'm in on Facebook, I had an unbelievable response and a few people started contacting me. I’ve met some new, fantastic people in the last few days because of this article.

This is my favorite unintended consequence of “coming out” with my illnesses and starting this blog: meeting kindred spirits and so many inspiring people. I had no idea that would happen. I’ve made quite a few friends along the way, those who are “kind of broken” and those who aren’t. That has been an incredible gift. 

 ** 

I hadn’t left the house for two weeks, perhaps the longest of any rough patch I’ve ever had, but husband took me to the used bookstore around the corner today and I wheeled around a bit. I got a new book to feed my nerd interests. He bought a book about engraving. It was nice to see other humans and to see that the zombie apocalypse had, in fact, not happened yet.

85% of the things I own are books and vinyl records. What's one more?

*** 

So there are fewer weeds right now. It’s hard to remember during a really rough patch that things do eventually turn around. It feels like it will never end. But it usually does.

Buck up buttercup. Everything will be ok. 

Going it Alone

Sorry for the silence on the blog the last few weeks. May was a bit of a rough ride for me. I had a  “probably should go to the ER” day  almost every week during the month and then got hit with some kind of GI virus which I termed “barfing disease.” It’s taken me a few weeks to feel more like my regular broken self instead of unable to leave my bed or eat food. I’m still fighting nausea every day. 

But I’m getting back to my exercise routine. I’m on the upswing and have a good feeling about June.

Mainly what terrified me the last few weeks as I could feel the deconditioning setting in as I had to spend most of my time in bed was the fact that I had to get my strength back because I will have to go it alone for the first time in almost a year this weekend. Deconditioning is your worst enemy with POTS and it sets in so quickly and is so hard to climb out of. My husband is going on a trip this weekend to participate in the Tough Mudder in Tahoe. He is going to get electrocuted, get hit with tear gas, and jump in ice water over a 12 mile course, and he couldn’t be more excited about it. He’ll have a great time. Plus, he gets to escape the 100+ degree weather we’re having.

So I’ve been crawling my way back and working hard since this will be the first time I will be solo since I’ve become home-bound and dependent on my husband for help with basic necessities. The last time I was solo, he went to Minnesota for our friend’s wedding in September. I was still able to drive myself to a store then, and I even drove myself to Costco to pick up my medicine. I haven’t driven myself to a store since then. That is not my reality anymore.

When he left in September, I had just gone on medical leave and had every intention of returning to work in a week or two. I was still trying to make everyone, including myself, believe I was still capably independent and able to have a career—not fighting an invisible decline that was steadily chipping away at my independence. In those first few days of his trip, it started to dawn on me how dependent I had become, how much I was struggling to do basic things. I realized that I had been living a lie for a very long time. That realization came at just the right time. I wrote this post about authenticity during those few days and made a deliberate shift in my life and self-perception—finally embracing authenticity and honesty. It was the catalyst that finally helped me accept and appreciate my limitations. And I haven’t looked back. Life is so much better for it.

I have this fairy tale image of how it’s going to go this weekend:

I’ll get our house clean while listening to a lot of jazz, play my keyboard, read, make myself meals, exercise every day, watch all four hours of Kenneth Branagh’s Hamlet and other nerdy things husband isn’t interested in, do some painting and writing, my friends will come over and we’ll drink wine, sing, play games…..

A fairy tale indeed. 

I’ll try to do some of those things but I’ll also have to be very careful not to max out all of my spoons so I can keep up with basic necessities. I can't do anything crazy like trying to drive or try to shower in the morning or get over ambitious with my exercise goals. I will take it one moment at a time, try not push myself too hard so I don't end up bedridden again and try not to panic as I wake up in the middle of the night not breathing. Slow and steady. My goal is to successfully make it through.

I want to say I was able to do it.

I am keenly aware that there are many Spoonies out there who regularly go it alone or who are single and do this alone every day. I applaud your tenacity and courage. It is no easy feat because there is very little room for error when you have to do this without help. You are true warriors. Living with chronic illness is a bit like caring for a body that is an impetuous toddler: your will is subjugated to the whims or tantrums the body will unleash at any moment. Any sense of control over your life is a thin veneer you feign to conceal what is truly fathomless chaos. Yet, we keep going and keep fighting. In the words of Elizabeth Taylor...

So all of you out there going it alone or who have access to invaluable help, you got this. We got this. Wishing you all the best